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Industry seeks certainty on dementia scheme

Industry leaders want a decision before the end of the year on a program to replace the Dementia and Severe Behaviours Supplement. Without something definite by then, they argue, there is a risk of losing focus on setting policy.

Alzheimer’s Australia chief executive Glenn Rees says: “The worry for Alzheimer’s Australia and maybe for others is what action is going to be taken? What sort of preparations will there be for the next [ministerial dementia forum]? How will there be some sort of momentum maintained in taking forward the policy work?”

LASA chief executive Patrick Reid adds: “We are concerned that provider capability for managing BPSD [behavioural and psychological symptoms of dementia] will not be considered strongly enough and a focus on transient acute support will be favoured.

“Although these services have merit in their particular context, [they are] unlikely to support providers in building upon their core competency and ability to manage BPSD and dementia in all its forms. We would prefer a model that builds capability and capacity.”

Rees says three priorities moving forward are: building on consumer-directed care and making the market place more competitive; introducing quality indicators and resident surveys to provide more transparent information to consumers; and direct action on the issues around BPSD through either expanding Dementia Behavior Management Advisory Services (DBMAS) of funding special units.

Earlier this year, the assistant minister for social services, Mitch Fifield, ordered a cessation to the dementia supplement, effective on July 31. This has caused uncertainty in the sector surrounding funding for BPSD-related services. Following the first ministerial dementia forum, on September 11, audit, tax and advisory services company KPMG has supplied a report to the government that suggests what can be done policy-wise in the short-, medium- and long-term to provide funding.

But Rees says the worry is whether any action will be taken.

Alzheimer’s Australia argues that special units and DBMAS should be centre stage in the short term, in terms of how the government could usefully allocate its money in respect to BPSD.

Meanwhile, Fifield, says: “Funding continues to be available for residential care providers to support the care needs of residents, including care needs associated with dementia, through subsidies determined using the Aged Care Funding Instrument.

“We remain committed to providing support to people with dementia, including through the [DBMAS], the National Dementia Support Program and Dementia Training Study Centres, and through our $200 million boost to dementia research.”

Rees says there was much positive comment at the ministerial forum surrounding the DBMAS as a means of providing advice to various types of carers and their patients on the management of BPSD. He says he was surprised at the level of positive comment towards DBMAS and adds the strategy is underfunded at the moment and is one that government could look to expand.

Still, Rees says more information about client groups, whom they’re serving, where the greatest benefits are and what kinds of relationship works best in terms of DBMAS is needed.

Another service that was viewed positively at the forum was special units, as was the thought that “although the $11 million the government has allocated for the supplement wouldn’t provide access across Australia for special care, it would be a good start to invest that money in special units located in places that would maximise access for people,” Rees says. “To be successful, special units would need to have some definition around not just the kinds of people who would benefit from the care but from the profile of the service itself. Alzheimer’s Australia has argued that special units ought to be characterised by having staff trained in psychosocial approaches, dementia nurse co-ordinators, good design for dementia and pathways to mental health locally.”

He says at the moment consumers have no way of knowing what the term special units means. “If a provider says to a consumer we provide special care, there’s no understanding of what it involves,” he adds. “The forum was very positive but I think we probably need to know more in terms of how we can roll out those services most efficiently.”

Alzheimer’s Australia is prepared to discuss where funding should be directed but says the time has come to do something.

For some experts, the direction of the funding isn’t the only concern – the level is an issue, too. Reid says: “Demand on services around BPSD has not diminished and so the effects are ongoing. Their impact [of the ceased supplements] is obviously manifested in loss of staffing, skills and programs to minimise BPSD.”

“The minister suggested that dementia is core business, so it should be funded as a core item. Age Services is not a cookie cutter service and hence there needs to be a range of options available to meet the needs of clients in community and residential settings.

“Our main concern is to ensure that providers have adequate resources to provide the right environments, programs and skills to the problem and $11.7 million dollars a year is a modest start but will not do this in the short term. A major rethink on funding and function needs to be done,” he says.

LASA would like dementia care and management skills and capability expanded throughout the industry. “Many of the issues faced in care as acuity rises are not limited to niche providers and are now distributed through all services, no matter the practice setting, so funding for services should be broad based and follow the client,” Reid says. “This situation further underscores that funding does not meet the cost of care and moving to an outcomes-based funding model in the medium term would be preferable.”

In the absence of a decision on the supplement, Reid says, providers and their staff continue to offer services to the best of their ability and resources.

Rees says with funding in aged care being very much based on a pool of resources that providers receive, consumers will remain relatively unaware of the effects of the cessation of the supplement. “The individual consumers are not aware at all of what dollars they’re attracting for their care and they’re not in a position to equate any dollars with the kind of care they’re getting,” he says. “There is no transparency in the system at the moment that would allow a consumer to make a judgement of that kind and attribute it to the supplement.

“We’ve been reporting stories of poor care for two or three years now in the context of the Productivity Commission and our own consultation, so in many ways the cessation of the dementia supplement no doubt will have made a difference to providers but consumers are in no position to know,” he says.

He adds that whilst some providers have voiced that an ongoing cessation will affect them, others have said the initiatives they are undertaking will continue. “It’s a very mixed picture. Different providers responded in very different ways to the supplement. I think the generalities are very hard to tease out,” he says.

Fifield briefly discussed his decision to cease the dementia supplement in a speech at the ministerial dementia forum.

“The supplement was poorly designed and implemented,” his speech reads. “Designed to support the care of 2000 residents with severe behaviours, at last count it was supporting 29,000 residents. The supplement cost $110 million over just 11 months – far exceeding its $11.7 million budget in the last financial year. Had it continued, the payment would have cost $780 million over four years, rather than the $52 million budgeted, and [more than] $1.5 billion over 10 years.”

In the speech, Fifield also argues that the only responsible decision he could make was to cease the service. “For there to be effective ongoing support for people with dementia, including those who exhibit severe behaviours, and long-term confidence in the sector, there has to be long-term sustainability. This means initiatives have to be financially sustainable and can’t blow out in the way the Dementia and Severe Behaviours Supplement did.

“What comes next is my focus. This is not a talkfest. From the advice provided by you – the ministerial dementia forum – a replacement for providers, whose operations are affected by supporting that small group of people with severe behaviours, will be developed within the existing funding envelope.”

At the forum, Rees says, there was also much discussion surrounding the need for rehabilitation to be more than just physical but also related to cognitive impairment. “That was quite a big issue that came out,” he says.

He adds there was also plenty of talk about independence and wellbeing in the aged-care reforms and what they for people who have a cognitive impairment.

However, he adds: “There were some obvious gaps at the forum, for example there was very little discussion of some of the healthcare elements such as primary care and early diagnosis acute care or prevention. While those things were mentioned, they probably could have done with more attention.”

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